AlphaNet Canada Patient-Reported Outcomes (PRO) Grant

Program Goal: Promote development of validated patient-reported outcome (PRO) tools to improve clinical trial design in Alpha-1 Antitrypsin Deficiency (AATD). The program supports development of PROs that will improve understanding of the pathogenesis of clinical manifestations of AAT Deficiency on lung and/or liver disease, ultimately improving treatment development and testing.

Award Details

• Total Funding: $300,000 CAD (approximately $225,000 USD at the time of announcement)
• Number of Awards: Generally no more than four awards
• Individual Award Size: Typically $75,000 CAD ($56,000 USD) each; maximum $150,000 CAD ($112,000 USD)
• Preference: Awards that can be completed in 1 year are preferred over longer-term proposals

Geographic Scope

Canada only — Eligible applicants must be qualified donees currently registered with the Government of Canada

Eligibility

• Only qualified donees registered with the Government of Canada are eligible
• Applicants must verify donee qualification status through "List of charities and certain other qualified donees – basic search" on the Canada Revenue Agency website (cra-arc.gc.ca) for Canadian donees
• For donees outside Canada, check "List of universities outside Canada registered as qualified donees" on Canada.ca

Focus Areas

• Development of disease-specific, patient-reported outcome instruments for AATD
• PRO tools that demonstrate responsiveness to treatment(s) in clinical trials
• Measurement of functional status, symptoms, symptom burden (fatigue, dyspnea), impact on health behaviors, and patient experience of care
• Tools addressing heterogeneity in AATD
• Validation of PRO tools using the NIH Alpha-1 Biomarkers Consortium (A1BC) cohort

Program Infrastructure Support

• Access to AlphaNet and Alpha-1 Foundation infrastructure available to successful applicants
• Available registries and databases: Alpha-1 Foundation Research Registry, Alpha-1 Canada Registry, AlphaNet Canada and AlphaNet Inc. databases, and NIH Alpha-1 Biomarkers Consortium (A1BC) program
• Successful applicants must use A1BC cohort to validate PRO tools developed outside this population

Vision

Develop disease-specific, freely available, patient-tailored PRO tool(s) supported by Alpha-1 community resources. Recognition that more than one Alpha-1 PRO tool may be required to capture disease heterogeneity.

What They Don't Fund

No specific exclusions stated in the announcement.

Application Process

Deadline: January 15, 2023 by 11:59 PM ET (Note: This deadline has passed as of the current date of April 3, 2026)

Required Materials

• Application form (available for download)
• Letter(s) of support from AlphaNet and/or Alpha-1 Foundation programs (required as part of submission package)

Submission Format

• Applications submitted through specified online portal/system
• See application instructions for detailed submission requirements

Contact

For application instructions and to download the application form, see the grant announcement page.